Myths and FAQs

patient_infoWhat is Hospice Palliative care?
Hospice palliative care provides physical, psychological, social, spiritual and practical support to people living with a life-threatening illness and to their loved ones. The terms hospice care and palliative care are both used to refer to the same thing which is a specific approach to care. However, some people use hospice care to describe care that is offered in the community as free-standing or volunteer based programs, rather than in hospitals. In 2002 the term Hospice Palliative Care was coined to recognize the blending of both models of care.   New Denver Hospice Society is a member of The BC Hospice Palliative Care Association and the Canadian Hospice Palliative Care Association.

When should a decision about requesting hospice support be made?
At any time during a life-limiting illness, it’s appropriate to discuss all of a patient’s care options, including hospice. Understandably, most people are uncomfortable with the idea of stopping aggressive efforts to “beat” the disease. Hospice staff and volunteers work closely with medical professionals including community home nursing, doctors, pharmacists and others to ensure that the best comfort measures are in place to maintain dignity and choice for the patient and their family.

Where is hospice palliative care provided?
Hospice palliative care is can be provided in the hospital, care facilities or in the patient’s home. It is not unusual for service to begin in the home and then transfer to the hospital or care facility depending on the level of care required.

Should I wait for our physician to raise the possibility of hospice, or should I raise it first?
The patient and family should feel free to discuss hospice care at any time with their physician, other health care professionals, clergy or friends. Nelson & District Hospice is not a building but staff and volunteers provide service in the patients home, the hospital, or care facilities.

What if our physician doesn’t know about hospice?
Most physicians know about hospice. If your physician wants more information about hospice, it is available from all three offices of Nelson & District Hospice Society as well as the BC Hospice Palliative Care Association .

Is there any special equipment or changes I have to make in my home before hospice palliative care begins?
Community home nurses typically assess what equipment would be most appropriate in your home although hospice often makes requisitions for hospital beds, commodes, wheel chairs and other items that make care easier. Most equipment is available for loan at minimal or no cost.

How many family members or friends does it take to care for a patient at home?
There’s no set number. One of the first things a hospice palliative care team will do is to prepare an individualized care plan that will, among other things, address the amount of caregiving needed by the patient. Hospice works closely with home nursing, community health care workers, family and friends to provide the most comprehensive care possible.

Must someone be with the patient at all times?
In the early weeks of care, it’s usually not necessary for someone to be with the patient all the time. Later, however, since one of the most common fears of patients is the fear of dying alone, most families want someone be there continuously for companionship and safety. While family and friends do deliver most of the care, hospices volunteers can assist with errands and to provide a break and time away for primary caregivers. .

How difficult is caring for a dying loved one at home?
It’s never easy and sometimes can be quite hard. At the end of a long, progressive illness, nights especially can be very long, lonely and scary. Hospice can also provide trained volunteers to provide “respite care,” to give family members a break and/or provide companionship to the patient including overnight vigils.

What specific assistance does hospice palliative care provide home-based patients?
Hospice palliative care patients are cared for by a team of physicians, nurses, social workers, counselors, clergy, therapists, and volunteers. Each provides assistance based on his or her own area of expertise. Because of the rural nature of Nelson & District Hospice Society, service may vary depending on the location.

Does hospice do anything to make death come sooner?
Hospice neither hastens nor postpones dying. Just as doctors and midwives lend support and expertise during the time of child birth, hospice provides its presence and specialized knowledge during the dying process.

Where is most of hospice palliative care delivered?
Hospice palliative care is provided in the home where possible, in hospital settings and in care facilities. Often care begins at home and then is transferred to hospital or care facility in order to provide for difficult symptom control.

How successful is hospice palliative care in battling pain?
Using some combination of medications, counseling and therapies, most patients can attain a level of comfort that is acceptable to them. New treatments and medications are constantly being developed as more is learned about end of life care.

Will medications prevent the patient from being able to talk or know what’s happening?
Usually not. It is the goal of hospice palliative care to have the patient as pain free and alert as possible. By constantly consulting with the patient, doctors and nurses have been very successful in reaching this goal.

Does hospice provide any help to the family after the patient dies?
Nelson & District Hospice Society provides continuing contact and support for caregivers for at least a year following the death of a loved one. We also sponsor bereavement groups and support for anyone in the community who has experienced a death of a family member, a friend, or similar losses.

Are there provincial or national hospice palliative care associations?
The Canadian Hospice Palliative Care Association (CHPCA) is the national association, which provides leadership in hospice palliative care in Canada.   CHPCA offers leadership in the pursuit of excellence in care for approaching death so that the burdens of suffering, loneliness and grief are lessened.

Why should we talk about death?
Death has been remote, hidden away in the back rooms of hospitals. There is a taboo about talking of death even though it is a normal part of life. Everything that lives dies. Family and friends must be aware that dying persons have special needs that can be met.

The BC Hospice Palliative Care Association is the provincial body that provides leadership, advocacy, support and resources to the many local hospice organizations around the province.

prayerphotoMyth:   Hospice is a Place.
Fact:   In some areas, there are buildings dedicated to Hospice Palliative care BUT hospice can be provided in any environment including homes, assisted living facilities and hospitals.

Myth:   Individuals have to give up their doctor.
Fact:   It is important for people to keep their own doctor who continues to be responsible for the individual’s care.

Myth:   Hospice is for Cancer Patients.
Fact:   Any life threatening illness allows someone to seek Hospice Care. Hospice resources serve a broad range of illness.

Myth:   Hospice Care has a time limit.
Fact:   Hospice care has no time limit as long as the person is palliative and continues to need care. Although community Hospice teams do not provide 24-hour care, every effort is made to offer services during the times most needed by individuals and their families.

Myth:   Hospice clients must be bedridden.
Fact:   Hospice serves anyone who is palliative regardless of their level of activity.

Myth:   Hospice Programs are for the client only.
Fact:   Caregiver relief is an important part of our program but also included are other programs relating to the illness or death of a loved one.

Myth:   Tears are an expression of weakness
Fact:   Tears are simply an expression of emotion. Emotions must be addressed or they will continue to overwhelm.

Myth:   Adults are always clear on religion and death.
Fact:   Often adults are unable to clearly express their own beliefs regarding religion and death.

Myth:   The goal is to ‘get over’ grief. Once it is resolved, it is over.
Fact:   Grief is not a disease to be gotten over. Reaching a point where you are able to think of the deceased with some level of peace is attainable but there will always be some grief that will continue to come up at different times.